For refusing to give autistic DS a treatment that will distress him?

[Hospedia]

I'm not the poo troll. I'm a long time poster who has name changed.

DS is in hospital and meant to be going home today. The doctor this morning was happy that he's well enough to be discharged and can leave after he's had something to eat and drink and one last set of obs.

He has eaten, drank, and had the obs done but in this time the shift has changed and his new doctor wants him to poo before he leaves because he says DS is constipated.

DS is autistic and sensory-avoidant, he hates going to the toilet. He also has encopresis. He usually takes a daily dose of Movicol which helps keep things moving along and his regular pattern is every 2-3 days. He last went on Sunday morning and I'd expect him to next need to go either last night or at some point today, if he didn't go by tomorrow then I'd temporarily increase his Movicol until he does. DS isn't showing any of the signs that he usually does when he's avoiding going to the toilet. We have a routine at home where he sits on the toilet for 5-10 minutes in the morning and evening to see if he needs to go and he's kept this up, he says he doesn't need to go yet and I believe him.

This doctor is insisting that if he does not poo by noon then he needs an enema as he is "seriously constipated". I've refused on the grounds that he would find this distressing both to administer and the end result, it would upset him to the point of meltdown which is usually followed by a shutdown, and it would create problems going forward potentially undoing all the hard work he has done in following a toileting routine and taking his daily Movicol.

Doctor has taken the hump at my refusal, has been back to try persuade me, has said I should try persuade DS, and has now gone to discuss it with the nurses.

AIBU to insist that he does not have this treatment? His reason for being in hospital has nothing to do with his bowels.

@bestcattoyintheworld

Absolutely insist that he doesn't have this treatment. You know his bowel pattern and how to manage it. I'm autistic and was seriously indecently assaulted by a doctor when I was a teenager and the terrible memory has never left me.

Just stand up to them. The doctor probably doesn't know what autism even is 🙄

I'm sorry but you simply cannot announce that a Doctor you have never met, does not know what Autism is! To be a Doctor, you need a PHD in Medicine. This covers ASD.

When you say you were assaulted, do you mean you were given treatment that you didn't particularly enjoy, or do you mean actually ASSAULTED?

To be a Doctor, you need a PHD in Medicine

It is pretty clear from this comment that you have absolutely no idea what you are talking about.

Medicine is an undergrad degree in the UK, you are awarded an MBBS or MBBCh. In the US and other countries where medicine is a postgrad degree, they are awarded an MD, doctor of medicine. Not a PhD.

Some doctors get a PhD (or MD) at a later date, but that is generally as part of a research career path. The average junior doctor doesn’t have a PhD.

Giving somebody who has capacity a medical treatment that they (or their parent if they are a child) have not consented to is battery, rather than assault, but still not permissible.

The PP specifically mentions “indecent assault”, which generally means sexual assault, and it is pretty disgusting that you are implying she is making it up/exaggerating.

Glad you're heading home OP and for what it's worth I definitely think you would have been right to refuse.

Sorry to derail but @Almostmenopausal what you've said is absolutely not true. You do not need a PhD to be a doctor and there is no guarantee that Autism will be covered in a medical degree. I am autistic and work with a local health Trust to improve understanding of autism - the Medical Director for the Trust who lectures on the local University's medical degree openly admits there's no autism training within the course and this is something we are trying to change.

Op ,I have a severely autistic child ,non verbal etc ,he also has chronic constipation ,he refuses all oral medication ,we really struggle to get movicol in him ,he gets it now off nurses in his special school , unfortunately he gets horrifically constipated and ends up with enemas ,bisocodyl suppositories ,if movicol works for your child great ,but it's very easy to get into a vicious cycle of withholding poo and then to point of enemas being the only option I would hate for any other parent to have to go through it ,it's very distressing for both my son and me when he needs an enema just be vigilant about the oral meds .

OP, the Doctor knows what he's doing. I also have an autistic child but that doesn't suddenly give me a medical PHD. It's a shame he'll have a meltdown but some things are necessary. The doctor will not be just saying he's severely constipated for fun?

Two other doctors didn't think he needed an enema and were happy for him to go home and follow his established toilet plan, they'd have liked him to use the toilet before leaving but said it wasn't essential. The registrar that the nurse spoke to before we left agreed the same thing. This other doctor tried to override that, was insisting he needed an enema despite there being no evidence he is constipated or withholding, DS displays clear signs when this is the case (increased weeing, bloating, hard tummy, smelly wind, loss of appetite, sensory-related anger, etc) and he was showing none of these signs. Even if he had been displaying signs I'd have preferred a more gentle approach than "he needs an enema" which would not be in his best interests unless the situation was critical. I can't even fathom forcing a child onto the toilet mid-meltdown, he would have to be forcibly restrained to keep him on there which would add to the distress.

Congratulations, OP.
You sound like the rare kind of person who'd have done the right thing in Milgram Experiment: en.m.wikipedia.org/wiki/Milgram_experiment

@Almostmenopausal, on the other hand... Sounds like the kind of average person who'd happily deliver lethal electric shocks to a human test subject just because the man-in-the-white-coat says so...

@Hospedia

This doctor did his bloods when he was admitted and when he cried during it she asked if he was going to be a big boy or a cry baby

WOW! Keep him away!

Almostmenopausal As a parent of an autistic child I feel physically sick reading what you just wrote. 'Shame he'll have a meltdown' ?????? Are you sick in the head or just talking bollocks? You'd choose to send your child into a meltdown for NO REASON? This Dr was wrong. I've never said this to anyone but with your lack of understanding autism and cruelty I sincerely hope you are never left alone with an autistic person.

I'm a nurse and I would never allow this on my shift. Plenty of people go every few days it's not abnormal. I would try more movicol this evening if he hasn't gone but no way an enema.

Please complain about this doctor - just email Pals. I know it's a massive time suck to do this when you have such a lot on your plate but he really needs to be pulled up on his shocking attitude so he doesn't carry on treating people like this. He might benefit from a refresher course in Decision making and consent.

@DeepaBeesKit

The doctor is being unreasonable but only pooing every 2-3 days doesn't sound often. Most people go daily, not going daily may not result in impaction but can result in stretch bowel and reduced sensation of toilet need.

I usually find with doctors it helps to assume they do have your son's best interests at heart, even if they aren't as familiar with his specific needs as you are.

Oh god OP you've just been PPsplained.

Obviously you are unaware of normal bowel routines & the problems that arise from non-daily defecation. & WTF would you know about your own son's medical & psych needs?

@DeepaBeesKit - in what way is a totally unnecessary procedure
that he would find this distressing both to administer and the end result, it would upset him to the point of meltdown which is usually followed by a shutdown, and it would create problems going forward potentially undoing all the hard work he has done in following a toileting routine and taking his daily Movicol
"in the best interests" of OP's son?

YANBU. The doctor as jumped to the last resort there in my opinion. You know your child better than anyone else and if you know this is normal for him then I would stand firm on your decision.
Doctors do get it wrong sometimes, it is just that person's medical opinion at the end of the day, you are well within your rights to decline any medical intervention you don't deem appropriate or necessary.

Almostmenopausal

I had something very invasive, painful and unpleasant done to me without consent. I didn't even know it was going to happen. Legally this is classed as assault. How dare you question my experience. I am a retired nurse and I know fucking damn well what medical assault is!

And my son's idiot paediatric psychiatrist doesn't know what autism is because we've had to go to clinical psychology to have him assessed for autism. Guess what? Yeah, he's autistic.

Doctors don't know everything. Some of them appear to know very little.

ASSAULT him?!?!? He's a Doctor for Christ's sake! Since when is medical treatment classed as 'assault?!' 🙄

When it's done without consent.

@bestcattoyintheworld you don’t get sent to a clinical psychologist because the psychiatrist doesn’t know what autism is. It’s that clinical psychologists are the ones who are trained in the tools that are used to diagnose autism. I am pretty sure your psychiatrist knows why autism is. That doesn’t always mean they are sensitive to individuals’ needs but you get lots of doctors with crap people skills. Doesn’t mean they don’t know anything though.

@Almostmenopausal

Are you planning on coming back and apologising and retracting your slew of misinformation?

Go home.
Fellow mum here with poop problem DS.You know what’s best for your DS as you know his routine.

I do object to measuring height/weight while at dr’s as the nurse managed to whack DS twice on the head while taking the measurement. She apologised but twice I asked her whether it was necessary and she said yes.
Her apologies meant nothing to me as DS was distressed,upset and howling. That’s the state he was presented to paediatrician after waiting 8 months for an appointment.

Now I object, give them approximate values (DS will not stand still) and explain why.
Recent visit to paediatrician was the same- apparently there was no note on his file that he’s got autism(diagnosed over 4 years ago).

@bestcattoyintheworld

Almostmenopausal

I had something very invasive, painful and unpleasant done to me without consent. I didn't even know it was going to happen. Legally this is classed as assault. How dare you question my experience. I am a retired nurse and I know fucking damn well what medical assault is!

So sorry this happened to you.

It's the comments like theirs that allow this to still continue and for doctors, nurses and midwives to not see that their actions are inappropriate

I too was assaulted by medical professionals - if people can say that shoving a hook up someone's vagina, while they are screaming and begging you to stop, while there is no medical emergency requiring it, without consent, explanation and discussion if fine and not a case of assault then they are part of the problem - for me that was just the beginning, it continued for hours.

Our experiences matter too, and no it's not on just because the perpetrator is a "medical professional" who is then protected from legal repercussions by their board

Just to say also I am sure you were one of the amazing nurses. You are let down by the ones who do these things. I almost cried when a nurse came over to me to change my pads and help me wash afterwards - she was so gentle, waited for my go ahead at every point and was the first time I felt cared for, instead of like a slab of meat on a table, during the whole thing

I’m glad you’re doing what you think is best. Doctors really don’t know everything. You sought others opinions and with this sort of thing you know your own child - my son has autism too and I’d do exactly the same.

Anyone can refuse any medical procedure or treatment. Lots of people don’t realise this and seem to treat doctors like gods. They really aren’t. I’ve got a rare medical condition (Addison’s disease) and the amount of total incompetence from medical people even when faced with printed factual information from the Addison’s society never fails to amaze me. If I had listened to (incorrect) medical advice in all circumstances I would have died several times over by now.

At this point I woukd have left already. Take you kid and go home. There's nothing stopping you unkess you needs meds from them

@Floundery

ASSAULT him?!?!? He's a Doctor for Christ's sake! Since when is medical treatment classed as 'assault?!

Yes, medical treatment without proper consent may be considered assault or battery and can give rise to civil or criminal proceedings against the doctor. It's best to check you're not utterly, demonstrably wrong before pontificating.

It's a shame he'll have a meltdown but some things are necessary

I simply do not believe that you are the parent of an ASC child. If so, this is chilling.

Considering the son of someone I know DIED because the DR was not properly trained in autism I think I'll go with the OP''s take on it thanks.

My ds will not use public toilets, that would most likely include one in a hospital.

(Person I know now has an OBE due to her campaigning on the matter)

YANBU

Fuck that.